The Power of Advocating, Networking, & Another Call

March 30, 2014 0 Comments Uncategorized

Hello my dear friends and faithful readers!

Can you believe it’s only been a little over a month since my last blog? I’m so proud of me!! Hope you have had the chance to read my last blog.

So, to capture the last few months of 2013- September was a pretty busy month for me as I’m looking back at my calendar. I had to buy one of those special 4 colored ink pens to differentiate my appts and other events.

I had a regular part time nanny job for a little girl. It was a referral of my current nanny job for a family that I have been caring for their boy for 5 years now and they had a second boy who is now a year a half; I watch them about once a week. I was excited to be able to care for a girl, a baby girl. She was about 12 weeks when I first started watching her. She’s now about 9 months. At the time, I watched her 3 days a week for about 3-4 hours. It was nice to be on a regular schedule again, getting up early, watching the Today show. It also helped with my financial expenses of some car repairs that popped up.

Sometime during the months of August-September, I learned I had become allergic to a type of iron that I had received several times before. I have no idea why this occurred, neither do the nurses or nephrologist. When the nurse tried administering the iron, it was burning through my veins and was extremely painful that it brought me to tears. The nurse stopped and then removed the needle. My wrist and forearm ached for about 3 days and my veins were bulging. I kept ice on it to try to bring the swelling down. My body needs iron, so I now have to go to the hospital to get it. I’ve made a couple new nurse friends, so it’s nice to chat with them when I get my iron. I’ve been 3 times in five months.

Through my advocating and mentoring of new patients efforts, I have become pretty close friends with another patient. She does nocturnal hemo dialysis where she goes to the clinic 3 nights a week, has her treatments, but pretty much sleeps during the process. She is usually done and home around 2:00 am and goes back to sleep a few hours. Dialysis is different for every patient and what fits their lifestyle and physical body make up. This patient created a journaling system based on her personal experiences and findings of her own medical records and discovered how inaccurate and false they actually are. It’s amazing and somewhat discomforting to know that doctors and nurses lie all the time to our faces. Here, we trust them and we are completely vulnerable with them, trying to find some way to embrace our chronic illnesses so we can continue living our “normal lives”; only to find out that they lie to us for what? Greed. For money. My PSA to you readers, get copies of ALL of your medical records to see what is being said behind your back. If you get treated poorly my medical staff in hospitals or clinics, doesn’t it make you kinda wonder why? It’s because they have read lies about you. I’m not accusing all nurses and Doctors of theses “malpractices”, I am cautioning you to thoroughly double check your medical records. The link to my friend’s website on the journaling system is

With my persistent attitude of empowering others and pursuing the possible career as an advocate; I had the pleasure of meeting with some corporate folks of the dialysis clinic. They were impressed with me and my proposal, that they offered me to speak at a local event. I got up very early on a Saturday morning, it was a cool crisp, yet sunny and fairly nice fall day, and gave maybe a 5 minute or so “speech” encourage the dialysis staff to take a few minutes to chat small talk with their patients, before jumping into the medical task of their visit. I incorporated some Dale Carnegie training like taking a sincere genuine interest in others. I am hoping this helped launch me into future speaking engagements.

Also through these advocating efforts, I had the pleasure of getting the opportunity to interviewed by a local news station. The reporter was one of my favorite gals that I had enjoyed watching many years in the morning. We had the interview take place in my friend’s home. So, I gathered all my supplies and got set up. I got to do my dialysis treatment for the reporter and the camera man to educate others on Peritoneal Dialysis. The reporter was extremely fascinated. I was told that it would air some time before the end of the month as she was doing a series of stories on various patients that battle chronic health issues and how the ACA will effect us.

A couple weeks later, my nurse transplant coordinator called to tell me the reporter was needing to get a hold of me. How funny! So, I called the reporter and left her a voicemail. She called me back and told me that she had changed the whole interview and would like me to come down to the studio to be featured live on tv. She was giving me the maximum amount of time to be on air, which apparently is 3 minutes. So, on September 25th, I went to the tv station with all my supplies- including my IV pole, my tee shirts, my fliers, and my notecards- in case I got stuck. I wasn’t really nervous at first. Even though I spoke from my heart, I still got a little memory block and fumbled for me words. I got to pitch my website and encourage people to be donors. I had watched the interview several times and noticed my microphone had fallen off the top of my tee shirt, so it was a little bit difficult to hear me. I had lots of positive feedback from friends and I was hoping that my nurse’s phone rang off the hook with potential donors. I give all the praise and glory to my Saviour who opened this door to educate others on Peritoneal Dialysis, that one can live a fairly normal life and to encourage people to become donors.

So, I received my third call of the year for 2013 for a kidney transplant on Sunday, October 20, about 9:57 a.m. I was getting ready for church and just so happen to have my phone in the bathroom with me as I was putting my make up on. I couldn’t believe it! I didn’t get too excited about it. I went to church and I literally had my phone in one hand while I was raising my other hand in worship. I couldn’t chance missing a call. I went about my day as planned and sometime maybe around the 6 o’clock hour, my nurse called again to let me know that she still didn’t have the results of the blood tests yet and it would be another couple hours. I went ahead and got my suitcase all packed, made arrangements for my dog to be taken care of, and headed over to my boyfriend’s house. He had gone ahead and ate dinner as I had misunderstood and thought he was going to grill out. So, I went ahead and ran out to get what may have been a last meal for awhile. I was wanting some good Italian. So, I had gone to pick up my to go order, and just as I had pulled into the parking lot of the restaurant, the nurse called me. She told me I had passed my cross match test; but the kidney offer went to the other candidate. I sighed a sigh of relief and went home to enjoy my lasagna.

Besides moving into a new temporary home, my fall months were busy with having a handful of car repairs done. I had heard about a little mom and pop mechanic shop just down the road from my church and decided to look into them. Little did I know, how much they would change my life, my car’s life, and bless me. I had my brakes fixed and they worked with me on cost for repairs. I was very open and honest sharing them my limited financial means as I currently don’t work and on disability. I also gave out my Carmen’s Runway to a Kidney Flier and they have it posted on their bulletin board. They went ahead and surprised and blessed me by replacing my muffler and exhaust system for free. They just so happen to have the parts that fit my car in their inventory. Wow! Is that God providing or what? I had to express my utmost gratitude and blessed them with some of the best barbecue in KC. I got them slabs of ribs, smoked beans, and another side. I also went to Target to get a couple liters of pop, some cups, plates, silverware, and dessert. They were humbled and oddly enough they were just talking about barbecue, specifically, this restaurant that I happen to get their lunch from. They were blown away! God is so good!!

A few weeks went by, and I noticed that I only had one speed for my heat in my car and it was like extra low. So, I called up my new pals and asked when I could bring my car in. I brought it in and they got the troubled area fixed. Again, they went ahead and blessed me with replacing another much needed part- the serpentine belt. Whenenver I bring in my car for any little problem, they look it over with a fine tooth and comb to see if anything else may impair my safety on the road. How thoughtful! I cannot recall any other mechanic I’ve dealt with in the past, that takes the time to do this. I am so blessed that I, as a single woman, have found an extremely honest, caring, and affordable mechanic. The power of networking and “who you know”; not to mention sound, Christian values, too.

Well, that sums up the fall months for 2013. I had to save the last month as it was such a powerful month for me for another blog.

Thanks always for taking time to read my blogs; your dedicated encouraging love, support and prayers!


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